Chraniopharyngioma

[Radzi]

my son 16 years old diagnose with chraniopharyngioma with hyrocephalus on 17 October 2012. The symptom is he could not control urination, tired and sleepy lastly cannot walk. The he had undergone operation on 29th Oct 2012 for installation of mechanical valve shunt to divert the brain fluid to the stomach. After the operation his health recover as per normal. On 21 Nov 2012 he again undergone major operation to remove the tumour and I was told 70% of the tumour being removed mainly the liquid part. After the major operation my son suffer back the symptom before his first operation, that he was very sleepy and confused, high sodium and low potassium. My son then pass away on 20 Dec 2012. Seems that the first operation is good. Doctors did the best of their effort but please consider my opinion. For the second operation, why not only did minor operation by sucking the fluid parts of the tumour using needle. Just for sharing... appreciate your comment. I attached MRI image before operation. Hope helpful to other patient.

[brainpain]

sorry to hear about your son . i had the same tumor and i was told it could be removed threw my nose/up threw my lip. my tumor started growing fast and i went blind in my left eye. i had a crainotomy in 06 and my eye site came back. my tumor came back in 2010 and i had gamma knife. i have low sodium and havent had any treatment . i didnt have any of the problems as your son.i stay tired and sleepy and dizzy alot and my bp is starting to drop . i am not on ant treatment and just told im fine. was you offered gamma knife? my tumor wasent in fluid and that maybe the differance. i dnt know alot about the tumors just what ive been threw. my tumor was 22mm when i had my surgery. i just wanted to let you know what i had done since i had the same tumor.

[victoriaprimavera]

Thank you for information. I am so very sorry about your son and think that you reaching out to others to help after such a tragic loss shows an amazing quality. Every bit of information is so helpful when navigating a disease. Thank you again victoria

[rumpled]

I was trying to speak in generalities when I spoke of aggressive tumors - it probably did not come across well. But any of the types can recur - mine came back right away.

I agree with minimally invasive approaches - hence why they use the nose now. However, cysts cannot be treated by simply removing the fluid as they would just fill up again so they have to have all or part of the sac removed for a permanent removal from what I know. As well, it sounded like your son's case was complex - with many factors in play.

My condolences.

[Radzi]

sorry, my son pass away 30 Dec 2012 not 20 Dec as written before. Nothing can be done to recover his life but some lesson to learn for the people that are still alive to save more live...

[Radzi]

My son prognosis was chraniopharyngioma which is not an aggressive tumor. The confirmation is after operation when some tissues taken for lab test. BTW the operation mainly tackle for removal of the liquid part which is about 60% of the tumor itself. For me as a layman the brain parts should be minimize to touch because we do not know what is the implication. My son die because it was written by God, but I still believe that reducing the tumor size with sucking the fluid out is the best approach, because at that time my son is in a very stable health condition. Definitely I don't blame the Doctors but I still believe there is a better approach to learn.

[rumpled]

I am not sure why they did an open surgery - transphenoidal is the norm now and is less invasive but even though I am not a doctor, your son's lesion looked very large to me but I cannot tell what is lesion and what is the hydrocephalus.

I always advocate experience when it comes to surgeons. The larger and more complex the lesion, the more experience you need. Anatomy of the lesion can make the removal complex so a fantastic surgeon with lots of surgical experience under his/her belt is your best bet for best outcome - but even with that, some still have aggressive tumors and bad outcomes like your son. Even though these tumors and cysts are benign, some of them do have sad and tragic outcomes like your son. It can be from the surgery or from hormonal imbalance or a combination.

If you get the surgical records, pathology and all, you may get a more complete picture - that is if you have access. I always get copies so I know where I stand as even I almost died from low sodium and low potassium in a hospital when the doctor (a silly stupid resident) would not treat me due to ignorance - even though I wear a bracelet (medic alert) telling how to treat me, carry a letter saying how and why and carry the medication in my purse and told them about it before I was admitted. Sadly, patients and family have to know things as critical mistakes can be made and my husband was the one to scream and yell and finally get what I needed.

[Radzi]

The operation is not via nose but just above forehead more towards left just above ear. Anyway, thank you... just for sharing if better technique in surgical that is less risky.

[rumpled]

I am so sorry to hear about your son.

It sounds like he had multiple issues - and I can tell you from experience that low sodium and high potassium are life threatening (that is what happens during an adrenal crisis). The tumor was also likely effecting other hormones like ADH (vasopressin) which was causing the urination and perhaps the fatigue was caused by a combination of low hormones.

I have had pituitary surgery myself. Just from the anatomy (the pituitary is located basically right behind the eyes and sinuses), it is not possible to put a needle up there. I am assuming he has the surgery via the nose or lip? and the surgeon would have had to access the pituitary again via the nose or lip to get up there to do any draining in order to get at the cyst.

The shunt would be in a different location.

Thank you so much for posting.